I've developed some incredible friendships online throughout this whole journey. Today, one of them sends me the following quote. It means a lot to me.
In matters of style, swim with the current; in matters of principle, stand like a rock.
I'm knee deep into research on human sexuality. The info from a link I posted to the uterinefibroids group led me to a couple of urologists in Boston who are going to map the nerves and arteries to the clitoris and vagina to determine what impact blood flow has on sexual response/feelings. It's been interesting. I've actually finally found where a lot of the "credible" medical links on human sexuality are located on the internet.
One of the things I've been worried about with UAE has to do with a pattern that I've seen on a number of email lists. . .positive posts frequently abound pre- and immediately post-procedure; but, when women start having problems or can't get their questions answered they tend to go away. If they have already posted incredibly positive "stuff", they don't want to rain on any one elses' parade so they don't post the negative when it occurs. And they don't return until several years later when they want to "vent" and "share" what had progressed with them. With the myomectomy group and the adenomyosis group and even the sans-uteri group the women seem to be upbeat and cheerful within the first year or so of their procedure. . .it's the women who are beyond the initial recovery phase that seem to be posting a lot of sad stories. I read an article on delayed hysterectomy syndrome--which apparently happens quite frequently within 5 years post-hysterectomy. It was not a pretty story. I hope UAE is the "panacea" for women in treating fibroids. . .but, I'm also concerned. Clearly my case was not typical. And, I know there are others who have experienced similar "results" to mine. I almost think that I'm better off because I have no where to go but "up" with recovering from this procedure!
Tuesday, 16 March 1999
To: Carla Dionne
Date: Tuesday, March 16, 1999 6:38 PM
Subject: Re: clinical trial of Viagra. . .
The results from our studies are not published as of yet. We have information about the clinic in a brochure form, and I can send you copies of the consent forms for the Viagra study and the Apomorphine study which describe in detail the evaluations and treatments. I also published an article recently in Medical Aspects of Human Sexuality discussing broadly female sexual dysfunction. Unfortunately, although psychologists and sex therapists have focused on this problem for some time, physicans and the medical community are just now realizing that female sexual complaints are not always psychologically based. In particular, in circumstances such as yours. If any of your contacts want to discuss their problems, I would be happy to speak with them. Please send me your address and I will forward you the information we have available.
Jennifer R. Berman, MD
As life would have it, I was laying in bed channel surfing tonight and stumbled upon a Learning Channel documentary on Viagra and sexual function. It was a new documentary and the last 15 or so minutes were devoted to the issue of women and the clinical trials that a number of doctors are performing. Dr. Berman was the showcased physician and there were a lot of details regarding her clinical trial and what she hopes to find out. Sigh.
I don't know anymore. I'm trying to hold my head up and be okay--but it's a struggle. It probably doesn't help any that I have a nasty case of sinusitis right now and am on antibiotics again.
I call Dr. Berman (Women's Sexual Health Clinic in Boston) and speak with her at length on the phone today. First of all, she told me that if I had uterine orgasms previously I should count myself "lucky" because not all women have experienced them. (I already knew that!) Secondly, she told me that, in her experience as a doctor and researcher on human sexuality, that once a pelvic injury occurs that disrupts the blood flow to the uterus, vagina, or clitoris, it is usually not likely to return to normal. I guess I should really be thanking my lucky stars that some feeling did return, finally, to the vagina and clitoris. As for uterine orgasms--she speculated that they probably would not return.
After speaking to Dr. Berman I called Dr. Goodwin and chatted with him about the whole thing. He actually thought that the taking of Viagra might be worth a try. . .I asked him about the return of blood flow to the uterus impacting fibroid growth and he couldn't really say, of course. But, what he did say was that since the impact of viagra on the blood system is so short lived (10 minutes or so) that he doubted that it would have an impact on fibroid growth.
Blue Cross sends me a claims plea along with copies of my medical records. They've highlighted what they've paid to date and what is still outstanding and someone has penned in the following:
Please help us speed up the process of your claim by resubmitting dates of service 11-06-98 for chart notes for processing. Dates 9-28-98, 11-03-98, 11-04-98 have been paid.
They've included what appears to be a copy of my chart notes from McLucas' practice for November 6, 1998. It's a handwriting mess with items entered for 6 separate dates. Completely unreadable. I note a few things about the chart notes. It appears as though I had a mildly elevated temperature on 11/6/98 and that, by then, I had already lost 13 pounds. Only 4 days post-UAE. There really isn't anything else on the page that is legible. Truly, it's a mess.
In looking over the bills submitted by McLucas to Blue Cross, I notice one other item that seems curious to me. A charge for $225 on 11/3/98. The day after my UAE when I was checked into the UCLA Medical Center under Dr. Goodwin's care. McLucas did show up that morning for a few minutes but did not even speak to me. In fact, I never saw him speak to Dr. Goodwin either. I wish I knew what the CPT codes stand for that he billed his time to on that day. I can't imagine what he was billing them for as it certainly wasn't for services rendered. I was not checked in under him and did not anticipate his presence in the hospital that day. Since he showed up and didn't do anything -- including speaking to me -- I just don't understand what was billed. I notice that there is no corresponding entry on the chart notes for that particular day either. Interesting. Very interesting.
In the sea of good and bad news, I finally received some good news. :) The results of my endometrial biopsy are in--no hyperplasia. All gone. Definitely good news.
I haven't taken Provera since the 19th of February and most of my side effects (nauseousness, inability to eat anything sweet--even fruit, headaches, etc.) are gone. The doctor says I have no need to continue on Provera. However, I've decided to use the progesterone cream anyways as I've noticed a bit of the emotional weepy side of myself returning as the Provera wears completely off. Also, it is possible for hyperplasia to return at any time as it just may well be that my body isn't releasing progesterone the way it should.
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